Superhero Suit

Today we went to see a physical therapist who’s been described to us as a mad scientist when it comes to outfitting kids with motility problems. Maggie doesn’t have mobility problems, per se, but she does have ataxia. So, her balance is a little wobbly. She manages fairly well, but she is more apt to fall down than most. And she runs with an adorable little skip. We always chalked that up to being a product of being adorable, but the PT we saw immediately recognized it as postural alignment concerns. She suggested we get a Theratog to correct her alignment, an arm brace to keep her left arm from flailing about, a hand brace to keep her from wringing her right hand raw, orthotics to correct her pronating feet and leg braces to correct her valgus knees. In an hour session she cinched and pulled and strapped Maggie into this crazy contraption, barely coming up for air to explain what it was she was doing.

When she was done, Maggie looked like this:

On the plus side, it helped immediately and she was able to bend her knees when she walked. Her little skip was gone and most importantly she seemed to tolerate it.

But, she’s going to be wearing this for awhile, and it’s intense. We’re obviously of the mindset that we’ll do anything we can that will help her. I just want us to go see someone someday who doesn’t have a crazy solution for a problem we didn’t know was a problem. So far, we haven’t met anyone who didn’t look at Maggie and give us a dozen more things to do. I’m thinking that her first words, when we can finally cure this and she is able to talk are going to be, “Enough’s enough, guys.”

Remember, a cure is possible. If you haven’t donated or volunteered, or at least hugged your little ones a little tighter of late, remember the power to change the course of this whole thing rests with you.